Saturday, April 28, 2012

Going better today, Yay!

So, after my previous rant, things seem to be better.

At breakfast, she protested self-feeding a couple bites of oatmeal.  She was watching a DVD she hadn't watched in several months and likely forgot that she owned.  Anyway, after realizing she wasn't getting her DVD unless she fed herself, she gave up the fight and fed herself the rest of the meal.

I thought we were doomed at lunch.  She saw the dishes come out and began to sob and protest.  She even threw her special plate into the sink, which thankfully is unbreakable.  She was telling me "no 'take a bite', no no no, no thank you."  Part of her protocol is prompting her with "take a bite," so she was essentially telling me she had ZERO interest in doing the protocol.  She was curled up in a ball on the kitchen floor crying her eyes out.  I even told Rob to get the camera ready because I figured we'd have something interesting to send to KKI.

I'm so glad to say I was WRONG.  I had the foresight to bring up a DVD she hadn't watched yet.  I got it from the library the other day, but she didn't know about it.  I asked her to choose her video and she happily chose the new one.  She was so interested in the new movie, she forgot about her protest.  I also gave her food she tends not to fight me about eating, and I'm sure that was a bit of a help too.  I probably could have given her some less preferred stuff too, but wasn't going to try it after that protest.  Anyway, she had 100% compliance at that meal.  Not a single protest at all.  I had to prompt her a few times because she was so engrossed in the DVD, but she self-fed every single bite without so much as a hint of negative behavior.

I didn't feed her dinner because Rob did.  That was the plan since I was at dance class and she has gotten an attitude about her.  I'm generally the one feeding her and she pitches a fit if Rob tries.  I told her before I left for dance class that Daddy was going to feed her dinner while Mommy was at dance class, and she was okay with it.  Thank heaven.  Rob said she did great.  No negative behavior at all.  He gave her easier food as well, but that's okay.  Her case manager said right now it's okay to focus on foods that give us less of a fight while they review the videos and try to work in an outpatient visit.

For now, we have the Abby in Wonderland (click the name for more info) DVD to thank for her behavior!  So glad the library had it.  I'm sure I'll be hitting up the library a lot in the near future for more DVD's for mealtime.

Tomorrow, we have a huge family event in the middle of the day, so that's pretty busy for us.  We aren't even doing her protocol at lunch because we don't want to risk any craziness in front of a ton of people, including quite a few we don't know well.  If her breakfast goes well, I may add one food to dinner that's a bit less preferred or even try a taste session of a new food and see what happens.

Friday, April 27, 2012

Way behind on blogging, and the regression continues....

So, things have been rough here.

Sarah continues to fight me on self-feeding.  It's frustrating and she drives me crazy with it.  I'm tired of having her decide she's not going to feed herself unless she loves the food.  I sent an e-mail to her case manager and we're working on it.  I have yet to get the e-mails from behavioral psych I was supposed to get, but her case manager and feeding therapist are working on it.  Hopefully two people after her might actually get her to e-mail me.  I understand Sarah isn't her only patient, but what I don't understand is waiting FOREVER to get an e-mail.  If it was going to take more than a day or two, she should have been up front with me about it.  Rant over.

In other news, Mommy and Daddy got to be adults earlier this week.  We had a Certifikid voucher (think Groupon, but a different company) for an overnight stay and wine tasting at a bed and breakfast.  Well, the wine tasting never happened because the wine house was mysteriously closed, but our night at the bed and breakfast was nice.  We also had a wonderful dinner at a really nice restaurant.  It was nice to eat a good meal without small children.  The service was excellent, and we really took our time.  The breakfast at the bed and breakfast was lousy, but oh well.

We have been pretty busy here.  Saturday morning, the kids went to Parents' Day Out with the ARC of Baltimore.  Sean freaked out when we got there until we told him he could play with Play-Doh.  Sarah was fine the whole time, but unfortunately she took scissors off the craft table and took a chunk out of her bangs.  Just hours before her dance costume pictures.  UGH!!!!  Good move there, Sarah! I was not happy with her.  I asked her teacher to please do her best to hide it for the pictures.  I'll find out when they come back.  Her bangs are kind of thick, so I can sort of hide it, but it really doesn't look very good.  I suppose it could be worse.

Sunday, Mommy and Daddy hung out at Daddy's boss's house for a dinner he cooked.  It was really good and it was nice to have adult conversation.  We had to leave earlier than the rest of the people because our babysitter had to be somewhere, but we still had plenty of time to spend there.

Otherwise, it's the usual busy around here.  Sarah has tutoring once a week.  She has psychotherapy once a week.  It was twice a week, but our insurance threw a fit and said that she only gets once a week now.  Sean has one more week of school.  His last day is my birthday.  He and I might head to the mall for lunch, and then he has an IEP meeting.  At least this one should be simple.  They just need to make an adjustment to put him in public pre-K in the fall, rather than have him getting services in the community.  Fine with me.  Probably the easiest IEP meeting I'll attend.

Tonight, on the advice of Sarah's case manager, I gave her a dinner of food she doesn't normally fight me on to see how she does.  She did just fine, which is good because our kitchen was unusually busy tonight.  I took video, so we'll see what they think.

Tuesday, April 17, 2012

Our follow-up appointment

So, we had our official clinic follow-up today.  Good thing, because we are definitely having problems with feedings at home.  Her breakfast this morning was atrocious.  She refused everything except the yogurt, although I was able to get her to eat the peaches eventually.  I had to re-mash them.  She still wouldn't self-feed them.  She vomited three times on pancakes, though.  It was awful.  She was not manipulating her food, no matter how much I prompted her.  It just bugged the crap out of me and I was near tears by the end of her meal.  I really just wanted to say to heck with it and end early, but I kept up with the protocol anyway.  It was upsetting for me, though, especially because I was by myself.  It sucked.

Of course Sarah was wonderful for her clinic meal today.  Self-fed everything, and only required a little bit of prompting.  That was mainly due to some major distraction.  She had to eat in the hallway because all the feeding rooms were taken.  Otherwise, though, she did great.  I had to tell D that it was an unusually good meal.  I suppose that's not awful since I do have some bad ones on video and have sent them to the clinic.  I sort of wish I'd gotten this morning on camera, but I'm also sort of glad I didn't.  I really don't think I want to relive that meal.

In general, we are still having a lot of trouble getting her to self-feed.  The other big problem is she isn't really moving the food around her mouth too often.  Sometimes she does, but she really just tries to swallow her food whole.  I had a great talk with the clinic people today and got some great tips.  I will be getting a protocol via e-mail soon to help with the self-feeding, and I should also be getting a plan to bowel train her soon.  Maybe, just maybe, I can finally get rid of diapers during the day.  She's been too old to be having poop accidents for a long time, so I'm anxious for it to stop.

As far as the moving food around her mouth goes, I spoke with her speech pathologist and we have a plan for that.  We are going to have an oral motor session sometime soon.  I think the tentative plan is to see what she can do with some easier foods at regular texture and move to those in her meals.  We suspect she's not manipulate fork-mashed foods because she's figured out she can get away with not chewing them.  She's used to being able to just swallow and not even manipulate pureed food like she's done for years, so she is sort of falling back into old habits.  She eats pretzel sticks at home without any issue.  It is under supervision, but I am pretty sure she hasn't had any trouble with them at all since we've been home.  If she has, it's been few and far between.  She can do freeze-dried banana chips as well with little to no issue.  She isn't as interested in those as she is the pretzel sticks, but she does eat them when we do oral motor practice.  She will grab pretzel sticks of her own accord, though.

Sarah has grown an inch and gained a pound since discharge.  When she had her well-child visit last week and measured an inch and a quarter over what she was past discharge and a pound over what she was since discharge, I thought there was a big scale/measurement discrepancy.  Nope, apparently not.  What a growth spurt!  She's grown an inch and a half and gained probably a bit over a pound since January.  I can't believe it!  Obviously she's eating enough.  Needless to say, nutrition had no issues with how much she's eating and drinking.  They were pleased with her variety of what she's taking in at home, so that's good.

I feel good about today's clinic follow-up, even though it was LONG.  So much waiting and I wasn't prepared for that.  Still, I feel like we have a plan for what to do moving forward.  I'm so glad that they are taking such good care of us, even after we've been discharged.  Had they not, I'd be totally lost.

In other news, Sean's birthday party was Sunday.  It went well, and everybody had a good time.  It was small and just family, but that was just fine.  Sean's going through a bit of a shy phase, and was even telling us "no party" that day, so I think he would have been overwhelmed if we'd had a huge party with a ton of kids running around.  My two plus his three cousins were plenty.  It helped that it was a warm (okay, hot, close to 90 out) sunny day and we could have the kids play outside.  He got some nice gifts and he's having a ton of fun with his new books and toys.  Sarah did pretty well at the party, but she seemed confused that I didn't do her protocol for her lunch that day.  She ate a tiny bit of cake icing, but wouldn't eat cake otherwise.  That was okay with me.  Sean joined in when people sang to him, which was adorable.  He got over the "no party" thing when he saw the cake and realized he was getting presents.  That's a four-year-old for you!

Monday, April 9, 2012

I should be going to bed, but I'm blogging instead...

So, I'll keep this brief.  I hope.

Overall, the actual eating seems to be on the upswing.  Unfortunately, the self-feeding, which wasn't even a problem before the clinic, is on the downswing.  Really, Sarah? Ugh.  Although, if I had to make a choice, this is probably how I'd have things go.  She's much less of a booger about refusing to feed herself than she is about refusing bites altogether.

Thursday was a LONG day for us.  We stayed home for the most part, other than a quick trip to the bank and one to the grocery store and to pick up dinner.  Mommy has been seeing Pizza Hut commercials for the $10 dinner box and has been wanting to try it.  I liked it, but probably won't do it again.  Too many breadsticks/cinnamon sticks and not enough pizza.  Anyway, since it was just me and the kids, no new foods introduced.  Actually, I don't think we tried any new foods all weekend.  The only thing we did differently on Thursday was give her pancakes for breakfast that Miss D had prepared when we went for our brief meal at KKI.  Sarah wasn't wild about them, but ate them okay.  I'll try and prepare them for her myself sometime.

Friday was not bad.  Funny thing is at the moment I'm blanking on what the heck I did.  I don't think we did a ton during the day.  Sarah had a therapy appointment that night, but nothing earth-shattering there.  Oh, and the kids got their hair cut.

Saturday, I got my hair done (highlights were WAY overdue) in the morning, which was really nice.  Sarah spent the morning playing outside and looked AWFUL when she came in.  Poor baby's allergies were driving her nuts.  The allergy medicine wasn't doing her any good and I felt so bad for her.  She has her well child visit on Thursday and I'm going to bring this up then.  That night we dyed Easter eggs with the kids and they were well-behaved and had a great time.

Easter was busy, but fun.  For the first time, the kids found the eggs without us practically having to lead them right to them.  It was really cool.  We met Grandma and Grandpa John (Rob's mom and stepfather) for lunch at a restaurant that's about halfway between our houses.  We had a nice time there and the kids were really good.  Then we went to my brother's house for his Easter festivities.  They had an egg hunt there, and my kids did so well.  Later that day, Sarah asked for strawberries out of the edible arrangement they add.  Okay, more accurately, she grabbed three of them.  Wanting to avoid a choking incident, or worse, I fork-mashed them and fed them to her, and she surprised the family by eating them with little no issue.  She did have a minor gag, but I assured the family she was fine and she was.  Go Sarah!

The other cool thing is that my middle brother with my middle niece's help taught Sarah how to swing independently.  This will make outside time so much more pleasant for all adults.

Anyway, the feedings overall, like I said, are going well.  She's eating everything we give her. She's just on a kick now where she doesn't want to self-feed foods that are less preferred.  She will totally refuse to self-feed certain ones.  I'm following the protocol, but she seems content to lose her reinforcer and have Mommy feed her.  I e-mailed her therapist and I'm sure we'll figure it out.  I'll take this over some of the displays we've had recently.

Wednesday, April 4, 2012

Getting better (I hope), and Happy Birthday, Sean!

So, my baby boy is FOUR today.  How on EARTH did that happen? Didn't I JUST have him?

How cute is he? Seriously.  Okay, so I'm biased.  But, I am just dying of cute exposure looking at that smile.  He's modeling his tap shirt here.  We've had it for probably two months, but hadn't tried it on yet.  Oops.  Thankfully it fits fine.

Here are a couple of Sarah in her costumes.  She grew enough at the clinic that I was worried they'd be too small.  Thankfully they still fit fine.

Cute, isn't she?  Oh, and you can't see in the pic, but she's got black capris to go with the tap costume.  I LOVE it, but can't decide if her individual photo should be in the ballet or tap costume.  If you have an opinion either way, feel free to comment.

Anyway, so things have gotten better since Sunday night.  I hope they stay this way.

Monday morning, I went easy on breakfast since we had to take Sean to school.  I didn't have the time or the energy to have a full-fledged battle at breakfast.  She had oatmeal, yogurt (I think), and applesauce.  Something easy like that.  I know that's taking the wimpy way out, but a mom needs her sanity.

After we dropped Sean off, we headed to a nearby mall and found out they didn't have an Easter Bunny (what?).  They had a post office, so we went to mail a package to find they were having computer problems and couldn't do anything.  Total waste of our time, but Sarah was super patient.  She got a lot of praise for being so calm and patient for me.  Anyway, then we headed to a different mall and went to go see the Easter Bunny there.  She loved him and they were really patient with her to try and get a good picture.  They got a decent one.  It was cute.  It's funny, Sean is terrified of the Easter Bunny and Santa, and Sarah loves them both.  Who knew?  After that, she wanted milk so we headed to Starbuck's.  I made the mistake of getting her one of those Horizon juice-box like milks.  Starbuck's didn't have them in plain, so I got her vanilla.  She hated it. :(  She was a good sport and tried a few sips, but I can't blame her if she didn't like it.  I'll remember next time and just ask them to put plain milk in a cup for her.  We headed to the library to pick up a held book for me and let her check out a book, and then it was time to pick up Sean.  It was really nice spending time with Sarah.  She was such a good little buddy and I know she enjoyed it too.  That was one thing I really enjoyed about the clinic.  I loved the one-on-one time with Sarah.  I just don't get much of that otherwise.  Anyway, Sean was super excited to see both of us and we both got a hug.

Sarah with the Easter Bunny

We grabbed lunch at home after the clinic.  I gave her strawberries and ran them through the food processor first.  They were probably a notch down from fork-mashed, but I was worried about fighting her by myself.  I think she had ravioli or some other Chef Boyardee and pears too.  She did fine with all of it.

For dinner, it was just my sister-in-law and me at home since I had to be somewhere with Rob and he wasn't going to be home in time to do a full meal with Sarah with me.  I braved lasagna with her, but took the time to run it through the food processor to get the noodles small enough.  I think she had peas and strawberries as well.  I noticed the lasagna had dried out a lot.  I added water too.  The lasagna was probably somewhere between fork-mashed and the texture below it, but I wanted to give her a good chance to redeem herself.  I set up the video camera to try and capture the meal so if she did act ridiculous, we'd have it on video.  Also, we could get video of her not chewing.  She was very leery of the lasagna when she saw it, but she ate it.  I was very proud of her.  

Yesterday she did well with all of her meals, including one eaten at a restaurant.  It was still one that I brought myself, but it was eaten without an issue.  We did lasagna again last night, and she did fine again.

This morning we did a meal at the clinic.  Her therapist saw how she isn't chewing her food most of the time, and she gave me some suggestions to hopefully set Sarah straight and help her out.  She saw a few of the other issues we are having, and helped me with that.  She also showed me a bit more with food prep, so that was nice too.

Tonight we have dance class and we're bringing cupcakes for Sean's birthday.  Woo-hoo! We'll probably have cupcakes at home too and sing to him since his party isn't for another week and a half.

Sunday, April 1, 2012

Another update

And more of a roller coaster for us.

First, an update on the bus situation.  Thursday morning, I had Sarah outside for the bus early.  Her bus attendant apologized for Wednesday and said she had in her head that Sarah wasn't riding the bus.  That more or less tells me they didn't even show up.  ARGH!  I know her schedule can be complicated, but geez! Besides, she hasn't had any appointments keeping her from riding the bus since we came back from the feeding clinic.

Anyway, as usual, meals are up and down for us.  Every time I think she's doing better and giving up the fight, I get blindsided by a horrible meal and feel like we've gone back several steps.  So frustrating!

So, Friday, I think it was, I tried grits with her for breakfast.  Just a five-bite session that we do for "new foods."  This wasn't really even new, exactly.  She ate grits fine at the clinic, but hadn't really had them in a meal yet, I don't think.  Well, they are apparently now disgusting.  I actually don't like grits anyway, but I was very frustrated with her because she ate them so well at the clinic.  I honestly wasn't predicting a problem.  I was just glad the time cap on the new food session isn't too long because we hit it.  She ate the rest of her breakfast fine.  I don't remember what the heck it was, though, other than her usual oatmeal.

That night was better.  I fork-mashed some peas and put butter on them.  She gobbled them right up for her five-bite session.  She didn't even give them a funny look or anything.  I was so proud of her!

Saturday was her last hockey practice of the season, and it was Daddy's turn to take her.  She did okay, but she is so set on using the walker for skating.  It's easier and she can go faster, but we want her to learn to skate without it.  We are hoping that we can get back to skating on our feet (I can sort of skate on my own, but I've only been ice skating maybe five times in my life) and take her some times this summer to public sessions and see if we can help her a little.  If she can skate independently and hold a hockey stick, the coach will probably move her to another practice session, giving us an extra hour of sleep.

Anyway, for lunch that day, I did a five-bite session of mixed vegetables.  Again, they were fork-mashed with butter.  She refused the first bite, but took a tiny taste (can't remember if it was willingly).  She decided she liked them and finished the bite.  The remaining bites were taken willingly and she did great.  I put peas in her regular meal, and she did very well with them.  She had one problem where she couldn't get herself a small enough bite and needed me to help her, but she was fine once I fixed that problem.

At dinner, her five-bite session was a chicken nugget that was fork-mashed.  She'd had one once at the clinic for a five-bite there and did fine, but at home she refused to try it.  I was annoyed, but not majorly.  I might try one from McDonald's or find out what brand they used or if they did something special.  I don't know.  I put mixed vegetables in her dinner and she needed a bit of prompting and had some minor refusals, but overall did fine.

Today she seemed really interested in the pancakes her aunt was making everyone for breakfast.  I gave her a little bit of mine and fork-mashed them, but she didn't try them.  I didn't press the issue since we weren't doing the protocol.  I didn't try any new foods on her for breakfast other than that.

At lunch, her new food was lasagna.  That's tough to fork mash, so I used a fork and knife and cut it as small as I could.  She devoured her five bites.  Her lunch itself went fine too.

At dinner, her dad chopped up some strawberries and I fork-mashed them into very small pieces.  She was a little hesitant about the first bite, but otherwise ate her five bites just fine.  Her regular meal was a DISASTER, though.  I think it may have been one of her worst meals since being home.  If not, it's up there.  I gave her lasagna, since she'd gobbled it up at lunch, pudding, and carrots.  She ate the pudding fine (of course), the carrots, and a few bites of the lasagna before throwing a hissyfit of epic proportions.  There was kicking, screaming, growling, crying, hitting, swatting at the spoon, spitting, pushing food off the spoon with her tongue, screams of "no", shrieks, and probably some other awful behaviors I'm forgetting.  I apologize to the entire East Coast because I think they all probably heard it.  It took all three adults living in the house to block her. Needless to say, we hit time cap, and I was practically in tears myself by the end of the meal.  I think part of the problem is she didn't chew the lasagna really well like she did in her five-bite session at lunch.  She tried to swallow a bite whole, had trouble doing so, and decided to heck with eating the rest of the lasagna.

Unfortunately, we are overall seeing a decrease in chewing during her regular meal sessions.  I have to remind her frequently, and even then she doesn't always do it.  It frustrates me to no end.  I have noticed that she seems to be chewing her bites when I do her five-bite sessions.  I'm not sure if there is a specific reason for that or not.  I sent her therapist a long e-mail (that poor woman is so patient with me) and let her know what happened and what I've noticed.  The lack of chewing is really concerning to me, and I think it's causing some of the other behavior.  I'm sure she would have been fine with the lasagna had she just chewed it properly each time.  She wouldn't have had the discomfort/difficulty swallowing the lasagna, and things would have been much nicer.

We are going to the clinic on Wednesday to do a meal.  It's not her regular clinic follow-up.  I'm hoping that she will do what she's been doing at home.  I think in the meantime we are going to try to videotape some of her meals.  If we can get either a horrible one where she acts ridiculous on video or at least one where she's obviously not chewing her food, then we'll be burning it to DVD and giving a copy to her therapists so they can see what we're talking about.

On a brighter note, it's Autism Awareness Month!  We lit our porch light in blue and will keep it blue all month in support of our little lady and her other buddies who are also autistic (okay, and everyone who's autistic).

The other cool thing is one of my favorite bloggers, Stark Raving Mad Mommy, made an awesome video featuring pictures of autistic kids. Two out of her four kids are on the spectrum, and she said she regularly hears people say s/he doesn't "look" autistic.  So, she made a video to show what autism really looks like. She requested pictures of kids on the spectrum a week or two ago, and I sent in three pics of Sarah because I couldn't decide.  She picked a cute one.  Sarah is at 0:43, with Elmo, of course!